Today is World Lupus Day. When I began SoulSEAker nearly a year ago, I vowed to focus only one blog entry a year, on May 10, about Lupus. While I have mentioned it at times, I do not want SoulSEAker to be a depressing place or an outlet to vent about the daily difficulties and issues I face caused by Lupus and Fibromyalgia. No sir.
This entry is, in no part, a call for sympathy or attention. My goal is to help you understand what Lupus is, to be honest and matter-of-fact about how it affects me, and what you can do to help spread awareness.
The first question a lot of people ask me is, “What is Lupus?” Well, the textbook definition of Lupus is a chronic and disabling autoimmune disease that causes, among other things, inflammation throughout the body.
The second question that follows is, “What the heck does that mean?” Let’s see if this can help you understand what Lupus is. The body’s immune system normally produces proteins called antibodies that protect the body from foreign invaders, such as viruses and bacteria. Autoimmune means the immune system cannot tell the difference between invaders and the body’s own cells (“auto” means “self”) and creates autoantibodies that attack and damage healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Symptoms vary from person to person, and it is very difficult to diagnose since symptoms mirror so many other diseases and tests can be unreliable. In fact, no two cases of Lupus are alike. It can be hereditary: my mother also has Lupus and we both have completely different symptoms. It can strike anyone male or female, of all races and ethnic backgrounds. I was officially diagnosed when I was 37 years old (and my blood test didn’t turn “positive” for Lupus until I was 40), but looking back, I realize I actually had symptoms appear as early as in my late teenage years.
The most prevalent symptoms that I have every day are:
- Extreme fatigue. I am mentally drained by 6:00 pm at the latest (sometimes earlier) and cannot complete any sort of mental tasks once I hit my “shutdown time:” I can’t write, read, grade, etc. Usually, about half an hour after my “shutdown time,” my eyelids become very heavy and I need to go to bed, which can be as early as 6:30 pm. It is very frustrating when it is a nice, warm, spring day and I’d much rather be enjoying the outdoors instead of shutting down from complete exhaustion and falling asleep before sunset.
- Low Energy. There are days when my energy is completely used up before 7 am. Those days are rough. Even something as simple as going from classroom to classroom or making my lunch will render me winded, and I will need to sit and rest to recharge if possible.
- Muscle and Joint Pain. Specifically, my legs and hips. Most of the time the muscle pain in my legs is what I would describe as “electric current pain.” If you can try to pretend that there’s a current of pain radiating like electricity up and down your leg muscles, that’s what I experience on a daily basis. My rheumatologist thinks that both Lupus and Fibromyalgia are working hand-in-hand with the leg pain. The joints that usually throb every day are my knees (left worse than right) and hips (right worse than left). Nothing helps alleviate my muscle or joint pain; I don’t even bother taking pain medication like Advil or Aleve anymore. I also experience pacing & mobility issues related to the pain, and I often walk very slow, like a turtle or a sloth (glad that both turtles and sloths are cute!).
- Headaches. Every day I have a headache. Some days Excedrin Migraine helps, some days not. They are always different and vary in intensity from dull to sharp: all over the top of my head, throbbing across my forehead, a sharp pain like an ice pick going through the left side of my head behind my eye, etc. You get the picture. Like Mama Gump said, “you just don’t know what you’re gonna get” on any given day.
- Face Rash. I have the typical “butterfly” rash, but most of the time, people don’t realize it’s a Lupus rash. On me, it looks like sunburn. Some days it burns a bit and it can be hot.
- Other random symptoms I have a few times a week include noise sensitivity, fevers, concentration/comprehension issues, and light sensitivity. Stress exasperates my symptoms.
The good news is that Lupus is not contagious. There’s no way you can catch it from me if we spend time together. The bad news is that, at this time, there is no cure for Lupus. I am on a number of medications, including steroids and chemotherapy drugs, which have made me gain weight. Ironically enough, I had West Nile in 2012, and it was the steroids I take for Lupus that saved my life and prevented my fever from going higher than it’s peak of 106.8. When I look at the big picture, I’d rather have a little more weight on me than not be here at all. I manage the best I can every day. My best days are ones with as little stress as possible and time to rest versus go-go-go activity.
Please do not misunderstand my explanations for complaints. I treasure each good day I have, and no matter how bad a day is, I know it could be a LOT worse. I count my blessings and am grateful, no matter what.
There are an estimated 1.5 million Americans and 5 million people worldwide with Lupus. Despite its prevalence, research has been relatively unfunded. Celebrities and notable people who reportedly have Lupus include Selena Gomez, Seal, Nick Cannon, Toni Braxton, Flannery O’Connor, Paula Abdul, Ray Walston (Mr. Hand for fellow Fast Times at Ridgemont High fans), and Lady Gaga.
What can you do to help?
- Understand that even though I might look healthy, I’m in pain and most likely battling energy/fatigue issues. Please don’t judge me if I have to cancel plans last minute because I’m exhausted. I assure you that I’d much rather be making memories with you than resting at home on the couch.
- Reach out to other people with Lupus like me simply with your understanding. Just your understanding. We all do the best we can on any given day, and there’s no reason to worry about or feel sorry for us. Believe me, we all wish you could fix it, but the reality is you can’t. Your compassion and acceptance of our situation are what we need the most.
- Sign the petition here to urge the World Health Organization to include lupus among the organization’s non-communicable and chronic diseases programs, and to assign a higher priority to lupus and develop global strategies that will increase access to education and support services for individuals and families affected by Lupus.
- Put on Purple on Friday, May 20, to increase Lupus Awareness. Information and resources for Put on Purple Day can be found by clicking here.
- Take action by visiting the Lupus Foundation of America’s tookit for Lupus Awareness Month
- Watch this short video featuring Erica Lupinacci #sufferinginsilence
- Watch this short video featuring Whoopi Goldberg #knowlupus
- Download this Lupus fact sheet to help educate others about Lupus
- Read this article titled “What Not To Do When Living With Someone With Lupus” by Barbara Leech
Thank you for taking the time to read this very personal post. I hope you learned something new, and that you will help spread the word about Lupus awareness. If you have any questions please feel free to leave a comment or to reach out by email: email@example.com.